When Patrick Bouvier Kennedy was born at 34 weeks’ gestation on August 7th, 1963, there were no ventilators to help the struggling baby to breathe, no treatments for respiratory distress and indeed no such thing as a neonatal intensive care unit (Nicu).

The death of the son of John F Kennedy and his wife, Jacqueline, 39 hours later, three months before the assassination of the president, put the spotlight on the care of premature babies and ultimately led to the birth of neonatology as a specialty.

Advances in technologies and treatments since the 1960s mean that today, premature babies as young as 23 and 24 weeks with very complex conditions can survive. Neonatology is an area of medicine that is very young in comparison with other areas of medicine, but is very dynamic, says Dr Claudine Vavasseur, a consultant neonatologist at the National Maternity Hospital at Holles Street in Dublin.

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“We, with the support of the Royal College of Physicians in Ireland, support the resuscitation of babies at 24 weeks’ gestation and 500 grammes. We have from time to time resuscitated babies at 23 weeks who have gone home but as a rule we do not do it and we do not have the tools or proficiency to do it. We have a responsibility to the families, not only for the babies to survive, but to survive intact and this is the aim of neonatology. We have to weigh up the chances of morbidity and mortality; it’s not simply survival at all costs.”

One of the most important advances made over the past 40 years, says Vavasseur, was the introduction of surfactant therapy to treat respiratory distress. Surfactant is a naturally occurring substance made of lipids and proteins that can be administered into the lungs of severely premature babies at birth to prevent lung collapse.

Ventilation strategies

Other major developments in neonatology include new ventilation strategies to minimise damage to the very delicate lungs of premature babies, intravenous parenteral nutrition specific to each infant, and the administration of antenatal steroids to mothers to help mature the baby’s lungs in advance of birth and to reduce the risk of brain bleeds.

Vavasseur says: “There has also been an increase in breastfeeding of premature babies as a result of evidence that shows breast milk significantly reduces morbidity, and is like liquid gold to these babies. It prevents a very serious and potentially fatal inflammation of the bowel called necrotising enterocolitis [Nec].”

The appointment of Dr John Murphy as clinical lead in neonatology in 2011 is viewed as a very positive move for the specialty in Ireland and has already led to the launch of a national 24-hour neonatal transport programme.

Sophia’s story

Ann Ryan was only 22 weeks and two days into her second pregnancy when she woke in the early hours of the morning to discover that her waters had broken. She was rushed to Wexford Regional Hospital, where she was told she had a very high chance of going into labour within 72 hours and of having a late miscarriage.

Fortunately, she didn’t go into labour but had to be kept in hospital to wait and hope that the baby would make it to 24 weeks, when she would be classed as “viable”.

At 23 weeks, Anne was given steroids to help the baby’s lungs develop and at 24 weeks, she was transferred to Holles Street. Baby Sophia was born there at 25 weeks and four days on October 19th, 2012, weighing 840 grammes (one pound, 14 ounces).

“It was one big rollercoaster from the minute she was born. She was actually crying at birth, which the nurses said was a great sign, although it sounded more like a mouse squealing because she was so tiny.

“I had Googled what a baby born at 24 weeks would look like but Paul [her husband] nearly fainted when he saw her. The nurses had to sit him on the floor and get him a glass of water,” Anne recalls.

Within 20 minutes of her birth, Sophia was in an incubator in the special care unit. Her parents had to wait five or six hours until the neonatal team had stabilised her before they could see her. Sophia spent 135 days in hospital, including seven weeks in Holles Street. Incredibly, for a baby born at 25 weeks, she had only one major issue; a feeding problem that led her to stop breathing for periods.

She was finally released from hospital five weeks past her due date and is doing very well. At two, she is small for her age and still wearing clothes for 12- to 18-month-olds, but this is normal for premature babies and her parents have been told she will catch up.

“She’s walking and talking and doing everything normally for her age. Thankfully, she has no developmental delays and is generally healthy. She has been in hospital twice this year which is very good for a baby born so prematurely. Like any normal sibling, she has a love-hate relationship with her big sister, but everything Grace, does, Sophia is right there behind her doing.”

World Prematurity Day takes place on November 17th every year, when parent groups and organisations around the world join to raise awareness about premature birth and how it can be prevented.

Families with premature babies in Ireland who need advice and support can contact Irish Premature Babies at irishprematurebabies.com or the Irish Neonatal Health Alliance at facebook.com/pages/Irish-Neonatal- Health-Alliance/682921181748015